Aging with HIV: Carrying the Banner

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Carrying the Banner
Aging with HIV is no joke, but the past anchors my future
by John Francis Leonard

Forty-eight. I’m turning forty-eight-years-old and it gives me pause. In just two years’ time, I’ll be fifty and will have been living with HIV for fifteen years. For me, and for over many of us living with HIV, that means carrying the banner of long-term survival. I’m not proud of being HIV-positive; given the chance to repeat history, I would have made some very different choices. But here I am and I am proud. Proud to have survived the diagnosis, proud to be living the life I now live in spite of it.

When I arrived in New York City to live at the tender age of seventeen, it was 1987 and a very different story. Yes, the city was incredible and I had a lot of fun, but it was also ground zero for a plague. The very men I had read about, that I wanted to be one of, were dying in record numbers. It was not unusual to walk the streets of the Village or Chelsea and see my heroes shuffling bravely down the street, looking like concentration camp victims, the blossom of dark lesions on their faces, and far too old before their time. In my romantic and social life I always gravitated toward older men and these men were living in fear. In my teenage years I barbacked and tended in a popular East Village gay bar. The men with whom I worked were all older and they all had it. None survived. I’ve had three major relationships in my life and every one of these men was an AIDS widow. The scars of this time run deep for so many of us. We lost our lovers and our friends. I lost my best friend and sex buddy in the early nineties. I think of him often. In my life, he was hands down one of the people whom I cherish the most.

I remember vividly sitting in my doctor’s office in 2003 and getting the results of an HIV test that I had been putting off for years. You see, I was always very careful until I wasn’t. Safe sex was marketed very heavily in the late eighties and early nineties. A condom during sex had become ubiquitous. But, I was never perfect and, as my partying intensified and my will weakened in the very late nineties, I grew less cautious. My doctor, Rick, delivered the news that I had always, in some way, expected. He expressed surprise at how unruffled I was. My reply was, “Well, it’s hardly shocking.” Luckily for me, however, it was a new era. There was a cocktail of medications that would save me from that horrible death that I had borne witness to in my youth. He told me that I would live a normal life span. However, Rick didn’t mention the ancillary effects the medications and the virus would have in the long run. Considering the alternatives, it’s a price I’m willing to pay.

So much happened to me as the last decade drew to a close. Due to psychiatric problems, I had to give up a stressful career in business that I loved. I downsized and moved back home. I had almost given up. There seemed to be no new chapter for me, much less something I could call a career. Then, a long held dream of writing began to take shape starting with a book review in this magazine. I pulled that novel out of the drawer and began rewriting it. Things began to take shape again—I had a future.

But, there are some issues I still have to deal with. Aging with HIV is not for the faint of heart. I struggle with neuropathy every day. The pain and discomfort I can deal with, my vanity, however, struggles with the pronounced tremor I have in my hands. It grows even more pronounced when I am nervous or excited. People comment on it from time to time and I simply explain that it’s a side effect of my medication. Lately, the fatigue I’m experiencing is a real burden. I’m stubborn though, and struggle to give myself permission to just take it easy when I need to. And don’t even get me started on lipodystrophy. I will never have a waistline again, it seems; although, a love affair with carbs makes it tricky to assign blame entirely to HIV!

I can’t complain though. When I start to whine or feel sorry for myself I think of all those brave men who were lost far too soon. I think of all my friends who didn’t have the choices and the luxury of living their dreams. They didn’t get to proudly call themselves LTS; they had no choices. So, everything I do, and will continue to do, is for every one of them. I’ll live my dreams since they’re not able. I’m a very happy and very proud long-term survivor of the AIDS epidemic.


John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.